Mighty Max and his Adventures

*****UPDATE*****

It is with a broken heart that I have to share that Maxwell Charles Smeby passed away on Wednesday November 30th. 

He was diagnosed with Male Retts Syndrome, which is extremely rare. Maxwell's case was also rare in it of itself. He was missing half of his X chromosome, which the sciene community has not seen before. Maxwell was meant for bigger and better things, and will be helping the science world start to learn more about Male Retts, Retts in general, and even autism. He gave everyone a wonderful 4 months here on earth, and will always be a guardian angel looking down on his family and friends.

They sadly still have some medical bills left for Maxwell, and have costs for his afterlife care and expenses. Any help that you can give to the Smeby family is very much appreciated in their time of grief.




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Maxwell is the first child Jessica and Bryan Smeby have welcomed into the world. All of the tests and ultrasounds during pregnancy were normal, and they were thrilled to be expecting a healthy baby boy.

Max was born on August 1st, 2016. When he was born he was having trouble breathing. He was immediately taken to the NICU, and has been there ever since. When Max was a week old he was transferred to the NICU at Johns Hopkins Hospital in Baltimore. He has an awesome medical staff there helping to keep him stable. The problem is that no one knows exactly what is wrong with Max – he does not have a diagnosis.

Maxwell is unable to breathe consistently on his own. When he is awake he does ok, but especially when falling asleep and sleeping, he has pauses in his breathing and takes slow, shallow breaths. He has been on oxygen his whole life. Max is also unable to eat on his own. Currently he is being fed through a tube in his nose. He has had so many tests in the last eight weeks, but everything is coming back either normal, clear or negative. He has had extensive genetic and neurological testing, and again, everything is negative or normal. No one knows why Max is having the problems that he is.

Right now Max is recovering from pneumonia for the second time, which due to his breathing problems has really been a struggle for him. Once he has fully recovered he will be having surgery to put in a tracheotomy and feeding tube. Hopefully after some recovery time he will be able to go home!

Jessica and Bryan cannot wait to bring Maxwell home. They are learning how to get used to their new normal, and are excited to begin their lives with Max at home. However, they still have a long road ahead of them. It is estimated that Max will be in the hospital for at least another month or more, due to his recovery after the surgery. The costs involved in caring for Max are becoming extensive, and continue to grow. The little things that we don’t think about are becoming overwhelming – parking fees, food at the hospital, extra gas, insurance deductibles, not to mention medical equipment, and medication that will be needed once Max gets home.

Many people have asked what they can do to help. Without knowing the exact costs for expenses coming in the future, this page is the best way they can think of. Everything donated to Max will go into a special account to provide for his medical care now and in the future. Any donation at all is so very much appreciated, and I know Jessica, Bryan and Max are eternally grateful.